Psychological adjustment in caregivers of school-age children infected with HIV: stress, coping, and family factors

OBJECTIVE: To assess for significant differences in psychological functioning between caregivers of HIV-infected children and caregivers of healthy children, and to examine the utility of applying a stress and coping model to caregivers of children with HIV disease. METHODS: Participants included caregivers of HIV-infected children (n = 36) and caregivers of a demographically matched control group of healthy children (n = 32). During their child's pediatric clinic visits, caregivers completed measures of psychological adjustment, stress, coping style, and family resources and support. They also completed a measure of their child's psychological adjustment. RESULTS: Caregiver psychological distress scores did not significantly differ between the HIV and control groups, and clinically significant rates of psychological distress were reported by more than a third of caregivers in both groups. Hierarchical multiple regression analyses revealed that independent of their child's illness status, stress and coping style were significant predictors of caregiver's psychological adjustment. In addition, caregiver psychological distress was a significant predictor of children's maladjustment. CONCLUSIONS: High rates of psychological distress were observed in caregivers of children with HIV disease; however, similarly high rates of psychological adjustment problems were found in caregivers of healthy children. Caregivers who reported high levels of daily stress and emotion-focused coping styles tended to report more psychological distress. Further, caregivers who reported more psychological distress also reported more internalizing and more externalizing behavior problems in their children, regardless of the child's illness status. These findings reflect the impact of poverty and environmental stress on caregivers' adjustment.     

Psychological adjustment in children and families living with HIV

OBJECTIVE: To assess psychological adjustment in children living with human immunodeficiency virus (HIV) and their primary caregivers. METHODS: The study protocol included use of standardized questionnaires to assess emotional and behavioral health of 57 children and 54 caregivers (Phase 1). Positive screening led to standardized interviews to assess current psychiatric diagnoses (Phase 2). RESULTS: Of the 16 children who entered Phase 2, 6 (38%) met the criteria for a psychiatric diagnosis. Of the 15 adults who met the screening criteria, 13 completed a computerized psychiatric interview and all 13 (100%) met the criteria for a psychiatric diagnosis. CONCLUSIONS: While important mental health needs were identified in families with HIV, the majority of families did not exhibit mental health disorders. These results might reflect the substantial psychosocial resilience of these families. Further study is needed to determine to what extent the mental health needs of children and their caregivers are being met. In addition, identification of protective factors in resilience and coping in families living with a chronic illness is warranted.     

A meta-analysis of the effects of psychological interventions in pediatric oncology on outcomes of psychological distress and adjustment

OBJECTIVE: To estimate the effectiveness of psychological interventions in pediatric oncology on decreasing psychological distress and increasing psychological adjustment using meta-analytic methods. METHODS: A meta-analysis was conducted on 12 psychological intervention studies in pediatric oncology using a weighted least squares (WLS) approach and random effect models. RESULTS: Effect sizes significantly different from zero were found for parent distress (mean = 0.35, 95% CI = 0.20-0.49, n = 7) and parent adjustment (mean = 0.23, 95% CI = 0.07-0.40, n = 5). Effect sizes for child distress, child adjustment, parent-reported child distress, and parent-reported child adjustment were not significantly different from zero. CONCLUSIONS: Psychological interventions in pediatric oncology show promise in decreasing distress and improving the adjustment of parents of children with cancer but may have minimal effects for child outcomes. Methodological issues of intervention research are discussed.     

Stress, coping, and family functioning in the psychological adjustment of mothers of children and adolescents with cystic fibrosis.

Assessed the role of illness parameters, demographic parameters, and hypothesized psychosocial/mediational processes in the psychological adjustment of 68 mothers of children and adolescents (7-17 years of age) with cystic fibrosis. Together the illness and demographic parameters accounted for only 13-15% of the variance in maternal adjustment. However, the hypothesized mediational processes accounted for 35-40% increment in the variance in maternal adjustment. More specifically, maternal adjustment was associated with lower levels of perceived daily stress, less use of palliative coping methods, and family functioning characterized by high levels of supportiveness.     

Psychological adjustment of children with cystic fibrosis: the role of child cognitive processes and maternal adjustment.

Found 60% of children 7-12 years old with cystic fibrosis to have a parent-reported behavior problem and 62% met the criteria for a DSM-III diagnosis based on a structured clinical interview with the child. Mixed internal and external behavior problem patterns and diagnoses of anxiety and oppositional disorder were most frequent. Support was provided for the hypothesized psycho-social/mediational roles of child perception of self-worth and maternal anxiety in child adjustment. Together, the variables of the transactional stress and coping model accounted for 39 and 43% of the variance in mother-reported internalizing and externalizing behavior problems and for 68% of the variance in child-reported problems.     

Identifying the variables impacting post-burn psychological adjustment: a meta-analysis

OBJECTIVE: The purpose of this study was to identify and evaluate variables that have the greatest impact on psychological adjustment after burn injury among children, adolescents, and young adults. METHODS: Meta-analytical procedures were utilized to determine the strength of association indices of identified impact variables. Only 13 articles were utilized due to the scarcity of and statistical limitations of the research. RESULTS: The body location variable (.26) had the greatest mean strength of association in relation to psychological adjustment. The burn injury variable (.21) had the second greatest mean strength of association. Finally, both the parental adjustment variable and the child premorbid psychological functioning variable (.15) had the third greatest mean strength of association. CONCLUSIONS: A major implication of this research is that the impact variables identified will be useful in targeting burn patients who are at risk for psychological adjustment problems.     

Psychological adjustment of children and adolescents with chronic arthritis: a meta-analytic review

OBJECTIVE: To review studies of psychological adjustment among children and adolescents with chronic arthritis to determine whether they are at more risk for development of adjustment problems than controls. METHODS: We used meta-analytic techniques to review 21 studies reporting overall adjustment problems, internalizing symptoms, externalizing symptoms, or self-concept among youths with arthritis. RESULTS: Youths with arthritis displayed increased risk for overall adjustment problems and internalizing symptoms, but not for externalizing symptoms or poor self-concept. Risk was greater in studies making comparisons to study controls rather than to norms and in studies including mixed disease samples (arthritis plus other rheumatic diseases) rather than samples of youths with arthritis only. CONCLUSIONS: Results suggest the importance of assessing for internalizing problems among youths with chronic arthritis. Future research may benefit from inclusion of child self-report of adjustment problems, diagnostic specificity in reporting results, and use of adjustment measures without somatic items.     

Psychological adjustment of children with asthma: effects of illness severity and recent stressful life events.

Although children with chronic illness are at greater risk for decreased psychological adjustment than physically healthy children, little is known about the factors that lead to increased risk. Eighty-one children with asthma between the ages of 6 and 14 years and their parents participated in a study to determine the relative contribution of background variables (age, gender, and socioeconomic status), recent stressful life events, and illness severity to psychological adaptation. Overall 11.5% of the children had CBCL Total Behavior Problems scores above the 98th percentile. Multiple regression revealed that lower SES, negative life change, and high illness severity were predictive of less optimal psychological adjustment. The results highlight the need for interventions to improve coping with both disease and nondisease issues.     

Predictors of distress in parents of children with cancer: a prospective study

OBJECTIVE: To investigate levels of psychological distress in parents of children with cancer and relationships between distress and measures of illness variables, appraisal, psychosocial resources and coping strategies. METHODS: Questionnaires were completed by 68 mothers and 58 fathers at 6 (Time 1) and 18 (Time 2) months post-diagnosis. RESULTS: High levels of distress for 51% of mothers and around 40% of fathers were apparent at both time points, with little change over time. For mothers, their appraisal of the strain of the illness, and their own ability to deal with it, and family cohesion were predictive of distress, both concurrently and prospectively, and, at Time 1, greater use of self-directed coping strategies was related to higher levels of distress. For fathers, risk factors of employment problems (Time 1) and the number of the child's hospital admissions (Time 2) were significant, along with appraisal and family cohesion. CONCLUSIONS: Continuation of high levels of distress over time points to the importance of identification of those at risk at an early stage and provision of ongoing support. Implications for such support are discussed.     

Psychological adjustment to pediatric physical disorders: a meta-analytic review.

Reviewed 87 studies of children's adjustment to physical disorders in a meta-analysis. Results indicate (a) children with such disorders show increased risk for overall adjustment problems, internalizing and externalizing symptoms; (b) risk was greatest in studies making comparisons to norms rather than to study controls; (c) risk varied by informant (teacher, mental health professional, parent), and by degree of matching with controls; (d) the self-concept of children with physical disorders across all studies appears significant for studies with careful matching or comparisons with norms; (e) there are interdisease differences, but the number of studies within individual disorders, with a few exceptions, are quite small. The need for improved methodology is discussed.     

Siblings of children with a chronic illness: a meta-analysis

OBJECTIVE: To review the literature pertaining to the siblings of children with a chronic illness. METHODS: Fifty-one published studies and 103 effect sizes were identified and examined through meta-analysis. RESULTS: We found (1) a modest, negative effect size statistic existed for siblings of children with a chronic illness relative to comparison participants or normative data; (2) heterogeneity existed for those effect sizes; (3) parent reports were more negative than child self-reports; (4) psychological functioning (i.e., depression, anxiety), peer activities, and cognitive development scores were lower for siblings of children with a chronic illness compared to controls; and (5) a cluster of chronic illnesses with daily treatment regimes was associated with negative effect statistics compared to chronic illnesses that did not affect daily functioning. CONCLUSIONS: More methodologically sound studies investigating the psychological functioning of siblings of children with a chronic illness are needed. Clinicians need to know that siblings of children with a chronic illness are at risk for negative psychological effects. Intervention programs for the siblings and families of children with a chronic illness should be developed.     

Brief report: empathy and psychological adjustment in siblings of children with cancer

OBJECTIVE: To examine relationships between empathy, illness concepts, sibling relationship variables, and psychological adjustment among siblings of children with cancer. METHODS: Participants were 29 siblings and 14 children diagnosed with acute lymphoblastic leukemia, acute myelocytic leukemia, or non-Hodgkin's lymphoma. Data included self- and parent-report questionnaires completed during active treatment. RESULTS: Siblings did not exhibit increased rates of behavior problems, but did display more social and academic difficulties. Empathy was a significant predictor of externalizing and total problems. Cancer knowledge was not related to adjustment, but was associated with empathy. Birth order of the child with cancer and closeness within the sibling relationship were associated with less positive adjustment. CONCLUSIONS: Empathy may play an important role in sibling adjustment following the diagnosis of cancer. Specific sibling relationship and family variables may be helpful in identifying siblings who are at greater need for psychosocial intervention.     

Predictors of PTSD in mothers of children undergoing bone marrow transplantation: the role of cognitive and social processes

OBJECTIVE: To investigate the role of cognitive and social processing in posttraumatic stress symptoms and disorder (PTSD) among mothers of children undergoing bone marrow and hematopoietic stem-cell transplantation (BMT/SCT). METHOD: Questionnaires assessing emotional distress, BMT-related fears, and negative responses of family and friends were completed by 90 mothers at the time of the BMT infusion and 3 and 6 months post-BMT. PTSD symptoms were measured 6 months post-BMT by both paper-and-pencil and structured interview methods. RESULTS: Emotional distress, BMT-related fears, and negative responses of family and friends assessed at the time of BMT hospitalization were predictive of later PTSD symptoms. None of these variables prospectively predicted a PTSD diagnosis as measured by the structured interview. CONCLUSIONS: Higher levels of general psychological distress, cognitive interpretations of the threat of the BMT for the child's future functioning, and negative responses of family and friends may place mothers at risk for post-BMT posttraumatic stress symptomatology.     

The role of parental coping in children with asthma's psychological well-being and asthma-related quality of life

OBJECTIVE: The primary purpose of our study was to examine the relationship between parental coping and children with asthma's psychological well-being and asthma-related quality of life (ArQL). METHODS: Eighty-nine mother-child dyads with a child with asthma ranging in age from 8 to 12-years old participated. During baseline and 6 month follow-up visits, children completed questionnaires assessing anxiety and ArQL; mothers completed questionnaires assessing coping, ArQL, an index of recent stressors, and demographic/medical history forms. RESULTS: Mothers who relied more on active coping strategies at baseline had children with better ArQL 6 months later, and those who relied on more avoidance coping strategies at baseline had children with poorer ArQL of life 6 months later. CONCLUSIONS: These results reveal that maternal coping plays an important role in the ArQL of children with asthma. Implications for interventions aimed at improving the physical and mental health of children with asthma are discussed.     

Brief report: fathering a child living with HIV/AIDS: psychosocial adjustment and parenting stress

OBJECTIVE: To examine the psychosocial stressors experienced by fathers of children diagnosed with HIV/AIDS. METHODS: Thirty-one fathers whose children (ages 6 to 19) were participating in pediatric HIV clinical trials completed self-report measures of parenting stress, psychological distress, and need for psychosocial services. RESULTS: Over half of this sample experienced significantly elevated levels of both parenting stress and psychological distress compared to standardized norms. Ninety-seven percent of these men reported the need for services including gender-specific support groups, assistance with discipline, disease management, and assistance with planning for the future. CONCLUSIONS: Elevated levels of parenting stress and psychological distress in fathers of children living with HIV suggest the need for additional psychological intervention in this population.     

Psychological Adjustment of Mothers of Children and Adolescents with Sickle Cell Disease: The Role of Stress, Coping Methods, and Family Functioning

Assessed the psychological adjustment of 78 mothers of childrenand adolescents (7–17 years of age) with sickle cell disease.Support was provided for a transactional stress and coping modelin delineating the processes associated with maternal adjustment.In particular, poor maternal adjustment was associated withuse of palliative coping methods and high levels of stress relatedto daily hassles. Variables of the model accounted for 55% ofthe variance in maternal psychological distress.     

Adherence among children and adolescents with insulin-dependent diabetes mellitus over a four-year longitudinal follow-up: I. The influence of patient coping and adjustment

An onset cohort of adolescents and children with insulin-dependent diabetes mellitus was studied over a 4-year period. Individual patient psychosocial and demographic factors were assessed at study inception and used to examine aspects of adherence over the follow-up. We found that initial assessment of patient coping (defense level, adaptive strength, and locus of control) and adjustment at study inception were predictive of the level of patient adherence to diabetic regimen over the 4 years of study. Psychosocial variables predicted adherence outcomes independent of patient age. This was found for three domains of adherence, i.e., diet, insulin adjustment, and metabolic monitoring, and for the composite index derived from the separate adherence scales. Preadolescents (ages 9-12) at study entry were more adherent than patients who were already adolescent (ages 13-16) when diagnosed. Using multiple regression, three factors (age, adjustment, ego defense level) accounted for 47% of the variance in adherence. No factors were predictive of change in adherence during the follow-up. Thus, psychosocial characteristics of diabetic children assessed shortly after diagnosis predicted typical or average adherence over a 4-year period. Identification of such characteristics may be useful in developing strategies for intervention early in the course of illness.     

A multimethod assessment of behavioral and emotional adjustment in children with asthma

OBJECTIVE: Examine behavioral adjustment and emotion regulation among 6-year-old children with asthma and a group of healthy controls. METHOD: Subjects were 81 children with asthma and 22 healthy controls. Asthma and allergy statuses were confirmed by objective measures. Emotional and behavioral functioning were assessed through parent report, child interview, and child participation in an emotional regulation paradigm. RESULTS: Maternal report revealed more internalizing and total behavior problems for children with asthma compared to controls. Child interview and behavioral observations of emotion regulation yielded no differences between groups. Severity of asthma was related to increased emotional difficulties by clinician interview and observation but not by maternal report. CONCLUSIONS: Two groups of children with asthma who have psychological difficulties include those with increased anxiety and those with poor emotion regulation and more asthma symptoms. Different measures of child adjustment yield a complex picture of the behavioral difficulties associated with pediatric asthma.     

Mood state and psychological adjustment to pregnancy

Summary The aim of this study was to investigate whether there is an association between antenatal mood state (depression and anxiety) and psychological adjustment to pregnancy. Participants were first-time, low obstetric risk mothers at a Sydney teaching hospital who completed self-report questionnaires measuring depression, anxiety, thoughts about motherhood and self as mother and relationship with the fetus. Higher symptom levels of antenatal anxiety were related to less optimal maternal-fetal quality of attachment, more negative attitudes towards motherhood and the self as mother. Similar trends were found for symptoms of depression, however depression was not significantly related to psychological adjustment to pregnancy variables. The significance of anxiety in the current study highlights the importance of considering anxiety in the psychological adjustment to pregnancy, as well as the in the context of perinatal mental health more generally. Implications of these findings for intervention are also briefly discussed.